Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 1, and we are marking the day by holding our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim…
by June Kinoshita, FSHD Society When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have…
Upcoming Featured Events
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. Join us today for our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback will conduct nonstop interviews from 8:00 a.m. to 10:00 p.m....Find out more »
3:00 pm ET | 2:00 pm CT | 1:00 pm MT | 12:00 pm PT. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck...Find out more »
Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the...Find out more »